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Snake Oil You Shall Always Have With You

According to this article, Stanslaw Burzynski is again in legal trouble because of his “cancer clinic”. I last wrote about him a few years ago, but never fear, he’s been extracting money from desperate patients the whole time. Here’s a detailed look at what he’s been up to, and it isn’t pretty. As this new article says:

But there’s no verifiable evidence antineoplastons work. Nor are they the gentle treatment Burzynski claims them to be. He has run Food and Drug Administration–approved clinical trials on the drugs since the 1990s, during which time at least six study participants died from hypernatremia, or high levels of sodium in the blood—likely due to the sodium-rich antineoplastons. Among the victims was a 6-year-old boy.

Over the years, Burzynski has been the subject of numerous investigations and legal proceedings, brought by grand juries, the FDA and the Texas Medical Board. As it’s become more difficult to continue registering his patients in antineoplaston trials, Burzynski has treated patients in other ways, still outside the medical mainstream. He uses chemotherapy drugs in combinations that have not been scientifically tested—and whose toxicities, according to the medical board, pose an unwarranted threat to patients.

This is the downside of some of the proposals for open access to investigational medicines, and any changes to be made in the “compassionate use” system need to take this problem into account. If you just look at the existing landscape of drugs in clinical trials, and you want to get them into the hands of more sick patients, you don’t really see Burzynski. But he and his kind are out there, and if any legal loophole appears, more of them could emerge with “investigational drugs” of all sorts. Tightening the system up enough to keep them out might mean that any new openings in the system might not be so open – there might not be as much room to work in there as one might like.

The stem cell therapy field offers a useful example. There have been all sorts of cowboy therapies offered to people who have cash in hand, and Stat recently focused on just how bad the situation is. Want something to cure your parent’s Alzheimer’s, your own MS, your child’s autism? Why step right up, and never mind that there’s no actual evidence yet that stem cells can do anything for any of these conditions.

The FDA’s moves come after years of pressure from physicians and researchers who have called for a crackdown on an unproved therapy that they consider dangerous quackery. These critics say there’s no evidence the treatments work — or that some of them even contain stem cells. Yet clinics charge fees ranging from $5,000 to $25,000 per treatment, with some patients reportedly racking up bills over $100,000.

Being charged 25K for having some of your own tissue injected back into you – or maybe it’s just phosphate-buffered saline, who knows – is not much of a medical advance. But there are so many people out there looking for something, anything that might help that a market will always exist. I think we just have to make sure that we don’t inadvertently expand it.

9 comments on “Snake Oil You Shall Always Have With You”

  1. steve says:

    Burzynski is the Donald Trump of oncology. No matter how much you prove he lies, all it means to his followers is that he’s doing a great job bucking the establishment (which actually knows he’s right but is just trying to protect its power structure). You can’t win against the conspiratorially-minded.

  2. Ken says:

    Actually, your own tissue and/or phosphate-buffered saline is probably somewhere on the good end of what they might be injecting into the marks patients.

  3. gippgig says:

    Trivial solution: Free treatments are exempt from regulations.

    1. Design Monkey says:

      Wouldn’t work. There are quite enough quacks, who work “for donations”. “Treatment” is supposedly free, but mark is strongly suggested to “donate”. Also there is type of them, who are primarily interested in popularization of themselves, so they offer their “treatment” ideas (like drinking baking soda, turpentine or kerosene) for free (or in 39.99$ brochures).

  4. tangent says:

    Does that say he’s had FDA approval for clinical trials continuing for 20 years even with 6 deaths by a mechanism attributable to the ‘treatment’? How does that work?

  5. Mark Thorson says:

    I suppose if you have legions of citizens writing to their congressmen to “get the FDA off Burzynski’s back”, then the FDA will be hesitant to take action against you. Good luck getting that kind of support for any Big Pharma company.

  6. aairfccha says:

    And on the other hand we have potential therapy approaches unused for decades because of red tape.

    http://www.theguardian.com/lifeandstyle/2016/mar/03/depression-medication-fda-psychadelics-ketamine-psilocybin-johnson-and-johnson-mdma#comments

    ” about 75% of patients with treatment-resistant depression respond to ketamine”

    “Ketamine is not the only psychedelic treatment that has a positive impact on depression.”

    “It may take some time to get the general public [and especially politicians] used to the idea of treating mental illness with drugs many [, in no small part thanks to anti-drug propaganda,] associate with destructive behavior and hard partying. The main roadblocks to wider adoption are the necessity of having office-based administration of the drug, says Levine, instead of the convenience of taking a pill at home. “

    1. zero says:

      Sorry to take the comments off-track, but…

      In-office administration of drugs in the US means paying $100 or more a day for treatment. It should work out fine in civilized nations, but here you have to find a way to pay for that invasive delivery system. Consider instead a pill with a rider, some other chemical that is safe in single-pill doses but causes nasty side effects (like vomiting, not like liver damage) in larger quantities.

      Psychedelics are more likely to work in the current US climate as short-term treatments under the supervision of a psychiatrist. By preparing the client and guiding them through a powerful perceptual shift experience, breakthroughs can be achieved in a few weeks that could otherwise have required years of therapy.
      There exists a long tradition of this practice in certain human cultures; in fact, a significant number of people who experiment with psychedelics like mescaline or psilocybin do so with psychological change as a goal. Some of them succeed, others are unprepared and get lost in the experience itself to the point of addiction. Like most black markets, there are people who exploit others thanks to the lack of regulation and legal protection.

      This kind of treatment might open the door for persecuted chemicals to be more broadly used. After alcohol and tobacco, oxycontin is doing more harm today than all natural drugs combined. It’s time to set aside our racially-fueled prejudices against the traditional ‘drugs’ and treat them like any other tool: useful in the right circumstances, dangerous in the wrong ones. Freeing up the resources currently devoted to oppressing users of cannabis might help turn the tide against heroin and methamphetamine, cutting rates of addiction and crime at the same time.

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